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Help us keep vital health data available for research

18 Nov, 2015

Data saves lives
Individuals’ health data is vital resource for health research and researchers have used this data for decades to understand more about the factors underpinning health and disease. The EU is reaching the final stages of negotiations on a new data protection law that will control how researchers use individuals’ data and we’ve been working hard to ensure that amendments that would have a damaging impact on research are not included in the final text. That’s why we’ve joined over 120 patient, research and medical organisations in an open letter published in The Times that asks the European institutions to find a balance in the Data Protection Regulation that enables life-saving research to continue, while keeping individuals’ data safe. Beth Thompson from the Wellcome Trust’s Policy team explains why this issue is so important to us and what you can do to help…

The Trust recognises the vital contribution that personal data has made to improving health in the past.  To continue to see these benefits in the future, it’s important that we facilitate research with personal data while ensuring that individuals’ data is kept safe and used appropriately. We’ve been working on the Data Protection Regulation since 2012 to make sure that it achieves strikes this balance.

The initial draft Regulation proposed by the Commission set out a proportionate mechanism for protecting privacy, while enabling health and scientific research to continue under certain safeguards. However, since 2013 we’ve been very concerned about amendments adopted by the European Parliament that would upset this balance and have a devastating impact on research involving personal data if they were implemented. MEPs have recently reassured us that their amendments were not intended to have such a negative impact.

Now, the EU is in the final stages of negotiations and it’s crucial that these positive words are turned into real action.

Patient photo

Patients expressing they are happy for their data to be used for medical research

We know the European Parliament, the Council of Ministers (which represents the Member States) and the European Commission all support research as a way to improve the lives of European citizens. We’ve signed this letter to ask the institutions to build on their shared interest to find a compromise that will continue to support genuine scientific research conducted under robust safeguards, like our current legislation. We also want to make sure that the Regulation is clear and does not leave doubt about how the text should be interpreted.

The outcome is far from certain and further action is needed to secure a positive result for research. The European institutions will be developing their solution over the next few weeks. You can help us get this important message across to them. Join 5,000 others by signing our petition to show that you want the new data protection law to allow researchers to continue to use individuals’ data safely and securely in health research.

Here’s the full text of letter:

Dear Sir,

Some of Europe’s most important medical discoveries, such as establishing the link between smoking and cancer, would not have been possible without using personal data. Countless lives have been saved and our growing understanding continues to improve health.

Disproportionate limits on the use of personal data in health research have been proposed to the EU Data Protection Regulation that would threaten crucial studies across Europe. It’s critical these restrictions are not included in the final version of the law.

Protecting privacy is vital. Strong safeguards and governance structures already exist to help ensure that personal information is used safely, ethically and securely in research.

We urge the European institutions to ensure that the Regulation works with these safeguards to strike an appropriate balance that protects the interests of individuals while enabling research that benefits us all.


Dr Jeremy Farrar
Director, Wellcome Trust

Dr Harpal Kumar, Chief Executive
Cancer Research UK

Dr Wendy Yared, Director
Association of European Cancer Leagues

President Anders Overgaard Bjarklev
Chairman of the Danish Rectors’ Conference – Universities Denmark

Prof Peter Strohschneider
President of the German Research Foundation (DFG)

Professor Martin McKee CBE FMedSci
President, European Public Health Association (EUPHA)

Professor Françoise Meunier
European Organisation for Research and Treatment of Cancer (EORTC)

Professor Gilles Vassal
President of SIOPE, European Society for Paediatric Oncology

Dr Katrín Fjeldsted
President of the Standing Committee of European Doctors/Comité Permanent des Médecins Européens

Professor Jane Elliott
CEO, Economic and Social Research Council, UK

A full list of signatories to the letter can be found here and you can find out more about the Trust’s work on data protection on our policy pages.

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